Sickle Cell and Thalassaemia Ireland (SCTI) charity number CHY20908 was set up and is run by Sickle Cell and Thalassaemia families, carriers and volunteers to raise awareness of and support for Sickle Cell and Thalassaemia patients and their loved ones in Ireland.
For many years Sickle Cell patients and their families suffered in silence. The absence of a support network and fears of stigmatisation from within their own community was very isolating. Patients experienced relative ignorance about the disease among healthcare providers, politicians and the public, in particular, at the point of care. A lack of information about therapies and limited support for disease management after hospitalisation meant most patients had to struggle alone.
In 2011 the founder Lora Ruth Wogu engaged with a few parents, friends and patients and decided to change this by creating a platform for patients and families to engage with others, share their experiences and the community as a whole, where they could advocate for the disease and provide support for each other. Sickle Cell and Thalassaemia Ireland was then registered as a company limited by guarantee, without shares in August 2012, and has been thriving in patient and family support, community awareness and advocacy since. SCTI is bound and governed by its Memorandum and Articles of Association as its governing document, and its newly adopted constitution.
Many of the beneficiaries of the services are people from the target groups which includes Africa and the Caribbean, Asia, western Europe and many Irish families due to intermarriage